How did you get out of the denial stage?

Discussion in 'Fibromyalgia Main Forum' started by Aberlaine, Nov 6, 2005.

  1. Aberlaine

    Aberlaine Member

    I've been diagnosed with this DD for a year. I know I've had it for at least six more.

    I'm stuck in the denial phase and need to move on. I'm still looking for a "cure" for my pain, brain fog, fatigue and lack of energy. For example, I keep telling myself that my fatigue is because I didn't get a good night sleep. Or that I take meds that are sedating. Not that it's a symptom of fibromyalgia.

    Or I try to convince myself that my brain fog and lack of energy is because I'm "getting old". I turn 61 tomorrow; I could be developing some sort of dementia. I accept the fact that I have arthritis, so that explains my back pain.

    How long did you "search" for another "cureable" disease before you accepted the fact that you had fibromyalgia and will never be "normal" again? Can you give me any tips to get out of this denial stage and move on to the acceptance phase?
  2. Tigger57

    Tigger57 New Member

    Honestly, I have not come our of the denial stage and I try everything that gives me some hope.

    I evern try pushing along. Only to cause my problems to my health.
    Tigger
  3. elsa

    elsa New Member

    I can honestly say that I don't think I was ever in the denial stage.

    I researched my symptoms and then went to my doctor saying I think I have this ....

    I'm lucky in that I have a doctor(s) who are well versed and understand these illnesses. I never had to go through the horrible treatment many others have in just trying to get a diagnosis.

    My thought process is I am so very greatful it's not going to kill me. I decided to "fix" what I could ... go around what I couldn't and learn to live with what's left over with quality of life medication.

    Good luck to you .... I'm not a pollyanna ... I really did have something a few years back that could kill me if it wasn't reversed. After that, my take on health problems changed.

    Take care,

    Elsa

    PS ... Blaming your daytime tiredness on sleep problems is not denial. Sleep disorders are a cornerstone of fibromyalgia and finding out which sleep disorder you have and then treating it is being proactive in your fight against CFS/FM.

    Taking medication ... some do make you sleepy ... is not denial. I think your are in better shape then you may realize.

    By the way, keep looking and researching for pain treatments that work in what your idea of life quality is. If they make you too sleepy for your quality of life .. keep trying until you find one that does match your "QOL" standards.

    E.
    [This Message was Edited on 11/06/2005]
  4. abbylee

    abbylee New Member

    But no matter how I feel about this DD, I keep searching for help.

    abbylee
  5. springrose22

    springrose22 New Member

    It is human to deny that you have a chronic disease. Elsa says it all very well above. However, if you never accept the fact that you have a DD, then you can't start living with it as best you can, and increasing your quality of life. Tigger 57, I have been reading about you and wondering if you were pushing yourself too much, and I think you may have admitted to that... Love to all. Marie
  6. Mikie

    Mikie Moderator

    I got so good at it that I was mentally able to disassociate from the pain. One day, I cut my leg open getting into the car and didn't even know it until my Mom saw all the blood everywhere. It was then that I knew I had been playing a dangerous game. That incident was the first step in getting help.

    Love, Mikie
  7. Aberlaine

    Aberlaine Member

    Thanks so much for all your comments. They've made me think a bit about what I've called "denial". Maybe that's not the word to use. I do accept the fact that I have fibro fog - and don't try to balance my checkbook on those days.

    I do acknowledge that I have pain most days and have been trying to find the best pain medication for me without the worst side effects.

    I do know that I'm tired most of the time and have very little energy after certain events. I've tried to say no to doing things that will knock me out. When I'm dead on my feet, I do take an Ambien to catch up a bit.

    So, that said, I guess I'm not in denial. My research is simply a thirst for knowledge. I want to know all there is to know about this DD! I am in much better shape than some of the people on this board. I still can get around, hold my grandchildren and visit with friends. For that, I thank God. And, if a time comes when those things become too much for me to handle, I'll simply adjust.

    Nancy
  8. Aberlaine

    Aberlaine Member

    I agree, Kristie. I've been wondering how we separate the symptoms we have from FM, from the symptoms we have from something else. Like Mikie said earlier, we get so used to blaming our aches, pains, etc. on this DD that we forget it could be something else.

    My lower back hurts. Is it because I have fibromyalgia or a herniated disk? I have pain in my right arm. Is it because I have fibromyalgia, or do I have tendonitis? I'm tired. Is it because I have fibromyalgia or is my pain keeping me awake?

    It's all so confusing!

    Nancy
  9. stinker56

    stinker56 New Member

    Before I was diagnosed with FMS, I was pretty sure that was my problem. I read lots and everything that I was experiencing was exactly what the disease symptoms were so when I heard the diagnosis, I wasn't really surprised but a little relieved that a doctor finally realized there was something wrong with me and not all in my head.
    Don't feel bad about having these problems and not being normal anymore. There is apparently lots of us in the same boat. Just accept the fact that there are going to be good days and bad days and live your life to the fullest possible. I am just thankful this disease isn't something that is deadly. It could be much worse.
    Hope you are soon feeling better.
    Stinker56
  10. springrose22

    springrose22 New Member

    Come to think of it, I knew I had CFS before being diagnosed. Likely, like a lot of others here, it's everybody else in your life who's in denial! LOL Marie
  11. PVLady

    PVLady New Member

    I don't think it means you are in denial because you look for ways to recover. Believe me, many of us here have spent years working on finding ways to get better, and have succeeded. It happens...

    Some people have problems, both physical and mental, much more severe than ours - others less.

    So we take one day at a time, being grateful for the blessings we have and try not to focus on the changes or losses due to our illness.

    This DD forces us to pay attention to it. You cannot continue to ignore it and function for long.

    Most of the changes involve reducing stress, eliminating toxic people from your life, and bottom line - really taking care of yourself.

    Everything you try is "trial and error". After coming here, I became very proactive to find a doctor to help me, and I did just that.

    Two years ago I was in constant pain and housebound. Today, I am out of the house every day and relatively pain free.

    For me I had to find a doctor who believed in fibro. He was not afraid to try pain meds etc. I wound up stopping the opiates and am taking a drug called Subutex along with a couple of Tylenol each day.

    They do not know how Subutex works but it blocks the pain receptors in the brain. It is also used to stop opiates without withdrawals.

    I say don't ever give up looking for new ways to get better. Also looking for the right doctor to believe in you. A doctor who is willing to try many different things until you find what helps.

    You did not get sick overnight, and will not get better quickly, but I believe we can all get better. A lot better.

    Take care...

  12. davebhoy

    davebhoy New Member

    as far as i can see you are still in the "hope" stage. i would try to stay there.
  13. libra55

    libra55 New Member

    that people with FM sometimes also have other diseases going on. I just got dx'd with Crohns, the doctors say it is hard to know which symptoms are from the FM and which are from the Crohns. Now I got both to deal with. I always had a suspicion I had something "more than FM" and that was found to be true, but that doesnt make the FM go away or minimize it, its still a darn Painful frustrating disease.

    I am better since I got on the prednisone and the immune suppressors, but I had to get dx'd with Crohns before they gave me those things, before It wasnt taken seriously (oh its "just fibro"). The last yr was the pitts, in and out of the hospital 3 times, and all the medical tests. And people including my own husband telling me "its all in your head".

    Well I got off the topic there. about denial. Yes I think a lot of us go through it. I know I sure do. I have good days when I think I could move mountains and I over do it, then I pay for it. I guess thats denial. Not knowing you're limitations. I have just turned 50 and am getting to realize I just can not do things I use to be able to do, and I do not know if I ever will be able to work again. That scares me. My husband has good medical insurance, thank goodness, because now I cant qualify for any. (pre-existing condtion). try not to think about these things, too depressing!

    I think a lot of us exist in a state of denial because despite what other think about us being mallingers and hypochondriacs, we really do WANT to be well and healthy.

    Michelle
  14. springrose22

    springrose22 New Member

    The important thing is to accept that you have the disease so that you can adjust your life and your expectations accordingly. You can, however, have hope, because I believe there are treatments which can improve your life a great deal, but it involves a lot of research, and a Dr. who will work with you. Love to all. Marie
  15. zerped

    zerped New Member

    I came to CFIDS after years of dealing with other health/mental issues. I'm generally a really good whiner, but for some reason I approached this newest one differently. I've always been an "action" person, and my attitude has been "Okay, what do I need to do for a life I can live with?" In the past, I was stuck in the "Why me?" mode, and I noticed that time would go by and nothing had changed. I used to scoff at people with the idea of "I'm disabled, not incapable." Now I understand what they mean. If you put the same amount of energy into action that you put into maintaining denial, I guarantee you'll get more of your old life back.
  16. dononagin

    dononagin New Member

    I'm still waiting to find out that I've been mis-diagnosed and a magic pill will cure me!! After 10 years of this! My family is even in worse denial.. I'll say dang... I'm exhausted today.. and they will say.. I'm tired too.. hmmmmm... I'll say my joints are really bothering me today.. and they will say.. Mom.. your getting old!!
  17. CanBrit

    CanBrit Member

    I was diagnosed last Christmas. I know I was very much in denial until about the end of August.

    I've had too many flares in the last year to think it's something else. My husband works with a guy who's wife has it too. When we have weather fronts come over, he can come home and tell me exactly how I'm feeling!!! Which is exactly how is friend's wife is feeling.

    I'm not expecting it to go away, so I just try to enjoy each good day and then take my drugs on the bad ones. I\m also working very hard not to sabotage myself by thinking I can do everything I used to.

    All the best,

    Eileen
  18. orachel

    orachel New Member

    I think this might come off sounding all zealot-y, which is not what I want to do at all, but me and Lolliboo were just talking about this today.

    I think its very very very important that we NEVER leave the denial phase!!@ Let me explain. First, I know that my pain, fog, etc all is part of FM...I understand that, and have no "denial" issues with those things. My issue is this....since I've been on this board, and been researching this disease I've run into SO MANY people who were told they had FM, and from then until the end of time any symptoms they had...regardless of severity...were always "lumped in" with FM and considered benign...non degenerative. But here's the problem. We're susceptible to mini strokes (according to many studies I've read), and I know many members here and many other case studies who've had them. My stepsister's stepmother (now that's what I call a blended family! LOL) is currently in Thomas Jefferson Hospital for brain surgery to repair a tear that's leaking her spinal fluid all throughout her body. I barely know this woman, but I'm praying for her like crazy. She's had FM and CFS for years, and suddenly she pops up with this crazy leak of spinal fluid. They do a brain surgery to try to fix the leak, and end up causing more leaks!

    I know many people here who have SEVERE neurological symptoms, whether its extraordinarily severe headaches, or randomly passing out, or difficulty reading and writing.....I also just found out that one of our members (only in her 40's, I believe) just had a stroke....

    I do NOT think this is normal. I do NOT think these things are ok, and should just be lumped into fm...as in "you've got fm...its normal to have neurological issues"...

    I think when we stop DEMANDING care for these severe symptoms, and stop INSISTING on having diagnostic tests run even if its just to rule something horrible and degenerative out...I think when we do that, we're just setting ourselves up for more severe issues in the future.

    I know WAY too many FM patients who suddenly have a stroke or major issue very early in life....I think in my opinion, I'm leaning more toward brain stem malfunction (as I've recently been reading about) as a possible causation of FM.

    Call it denial...call it whatever you want. I know my doctors, and if I let them get away with it, I'd suffer endlessly before they did a test, or considered another option....here's a good question. How many people you know JUST have FM? Just about everyone I know has something else with it that is degenerative (not all....but many). And I'm convinced that something in this DD either makes us more susceptible to these other issues, or somehow causes them....Its just too frequent to be a coincidence.

    And I have a family who I love, and I want to be around for a long long time. I'll keep being in denial. I acknowledge and own that I have FM. But I still insist on a funny old fashioned thing called DIAGNOSTICS from my doctors. They think its funny, and usually refuse my request for this test or that test....but I just got results back today from a test I BEGGED for (sleep study) for 2 mos before my doc finally ordered one, and it turns out I have a major sleep disturbance that could be dangerous, and need a CPAP machine to breathe at night, and most likely also have to have surgery to correct this problem....

    Now how long would my doctor have let me suffer if I hadn't been a royal pain in the bum about it? God forbid, 3 years from now I could have ended up in congestive heart failure (yep...know a member here who this happened to because of a sleep disturbance) from this problem, and my doctor wouldn't have batted an eye. THEY (doctors) have many other patients to worry about. They also have to worry about insurance cos, pharmaceutical cos....I (so unfortunate, but very very true) am NOT their biggest priority.

    So, I've gotta stay in DENIAL or whatever you call it to insist that I get the care I need. Sure...a lot of it is FM. And unfortunately, for so many of us....there's a whole lot that isn't FM and is a lot less benign that we have to be ever vigilant about. Sad, but true.

    And by the way...as for cures....there's no "cure"...we all know that, unfortunately! But I know sooo many people who've suffered non stop for 5, 10, 20 years...and then stumbled onto something (after trying so many things that didn't work) that made a HUGE difference for them. For some its castor oil packs and mangosteen and fish oil, for others it Traumeel S, and some just feel drastically better when they get on the right medications.

    Bottom line here (and man...this turned into a rant! I'm so sorry! LOL...can you tell I feel very strongly about this? LOL) is that I'll never accept that THIS (pain levels of 7-9 constantly...even with narcotis...terrible fatigue, virtually non functioning in so many ways...) is as good as it gets for me! I just won't! There is a solution out there. I'm not looking for a miracle cure, and goodness knows I'm willing to put in the time and effort for research to find it....but eventually we'll all find something that improves our overall health if we look hard enough. I don't stop living in the meantime, and I'm not obsessed with it or anything...but I figure this DD has virtually ROBBED me of my career and my vibrant exciting days out with my family.....if I have to spend an hour a day (about all I have energy for anyway! LOL) learning the new research, and trying to find a better doctor, or looking on these boards then that's just what I have to do. I think of it as a VERY part time job. The job is working on my health. The paycheck is feeling better (eventually! I hope! LOL).

    Anyhoo, that's my whole take on denial. And based on all I've read here...it does seem that those of us who "rage" against this disease and keep looking for a solution (though again...not to the exclusion of the rest of our lives) seem to be the ones who are less predisposed to fall into a severe depression, and also those of us who end up finding something that puts us into remission. I'm just praying I'm one of them someday!

    Hope all the best for you! They do say that the 1st year after diagnosis is the hardest...you're already done with that nonsense! LOL...I'm only in my 5th month...I still have a while to go yet!

    Hugs,
    Rachel
  19. bunnyfluff

    bunnyfluff Member

    I am still looking for a simple explaination, something the Dr's have missed, something to make it all go away.

    I keep thinking if I do it all right, eat well, exercise, take the right suppliments, run the right tests, switch to the right meds I can make it all end. And I have increased my quality of life 110% over where I was in the beginning.....the denial part is that I will never be back to where I was before I crashed.

    I still do more than I should- last weekend I helped my husband with a construction project!!! Yeah, a "weekend warrior"!

    I guess because I am one of those people who never failed to accompish what they set their mind to, it just does not compute that this DD can win. To some degree I accept it, I guess I just don't give in to it.